Just had initial Neurologist consult........

[Feynman]

Hello All. I have read the Sticky and the many helpful comments in this forum. I realize that many of your are PALS or CALS, and I definitely do not wish to waste your time. Rest assured that I am not looking for a diagnosis here -- I will leave that to the doctors. But I would truly appreciate any helpful input, observations, or suggestions.

First, a little background on my situation. Approximately 25 years ago, when I was in my mid-30's, I experienced some concerning neurological symptoms. These symptoms began after I received a series of vaccinations, but of course that may have been a coincidence. The symptoms were as follows:

1. Widespread fasciculations (everywhere!), with essentially continuous fasciculations in my left foot (24/7).
2. Slight weakness in my left side facial muscles, but only evident when smiling.
3. Generalized muscle stiffness in left foot, leg and left hand/wrist. No clinical weakness. No cramps. No pain.
4. Strange swallowing wherein adam's apple moved to the right side when swallowing. No choking. No dysarthria.
5. Occasional tingling sensations in left leg and left face, but this feeling seemed to me to be related to the fasciculations. No other sensory symptoms.
6. Occasional urinary hesitancy.

This was of course a very stressful time for me, as I was concerned about ALS and other diseases. However, for various personal reasons I decided to wait and see if my symptoms continued to develop, and no MRI/EMG tests were conducted at that time. To my surprise, these symptoms did not get any worse, and in some respects even slowly improved. The widespread fasciculations remained, but were less common, and I have just learned to live with them. The other symptoms just became my new normal, and I moved on with my life, and put my concerns about ALS behind me.

Fast forward to today - I am now 60 years old, and over the past year or two I began to experience some occasional foot cramps, and began to constantly feel I needed to clear my throat due to mucus accumulation on the right side. I also developed an annoying chronic cough. However, none of these issues were bothersome enough to really interfere with daily life and activities. Then one night in September 2024 (a few days after receiving Flu and Covid vaccinations), I was awakened at night by repetitive painful leg and foot cramps (both legs). This happened multiple times. Over the next few weeks I experienced a dramatic increase in symptoms - similar to 25 years ago, but much more intense this time:

• Widespread fasciculations (limbs, torso, back, face, throat, neck, etc.)
• Cramps in left and right feet and calves.
• Increased resting muscle tone in legs. Often feels like a cramp is imminent.
• Generalized feeling of muscle stiffness and fatigue.
• Constantly clearing mucus from throat. No choking, and my swallowing seems OK.
• Occasional slurring of speech (not sure if this is due to tongue or lips).
• No obvious clinical weakness (just perceived weakness in both hands, arms, and legs).
• No sensory symptoms.

I saw my GP in early November, and he immediately provided a neurology referral. I had my initial neurology exam last week. The neurologist was not a neuromuscular specialist, but he spent a full hour with me and conducted a thorough exam. The results of my clinical exam were all normal except for brisk (3+) bilateral knee reflexes. The neurologist witnessed my fasciculations, and felt that further tests were in order. He first ordered extensive blood tests (electrolytes, vitamins, heavy metals, CBC, etc.), and the results were all normal. So I am now scheduled for brain and spine MRI's and an EMG in January.

The neurologist thought it unlikely that my symptoms were related to my September vaccinations, although that can not be 100% ruled out at this point. He feels that there are several possible explanations, one of which is ALS. The bottom line is that I will need to wait for the MRI and EMG. There is an ALS clinic nearby that I can be referred to if necessary for a second opinion.

I would appreciate any thoughts or insights that you are willing to share. At this time I have no diagnosis, and I will admit that I am very concerned, and somewhat confused by my symptoms. The fasciculations, cramps, stiffness, and throat symptoms seem very similar to some patient descriptions on this forum of their initial ALS symptoms. On the other hand, the fact that I had similar (although less intense) symptoms 25 years ago would seem to indicate perhaps something other than ALS.

So for now I am just really scared and confused. I hesitate to discuss this with my wife, as I do not want her to worry. Other than the throat clearing, my symptoms are not obvious to my wife or friends. Thank you for taking the time to read, and please let me know if you have any comments or recommendations regarding further tests/exams.

 

[lgelb]

An EMG and MRIs sounds on point to me. I really doubt this is either any kind of post-vaccine illness or ALS. As you say, it has remained in some form from onset 25y ago to now. It could be something like GBS or some other polyneuropathy that is reactivated from time to time. I presume you had vaccines between onset and now?

Did they test for Lyme and inflammatory markers?

You will have more information soon -- try not to worry.

 

[Feynman]

Thank you for the reply. Yes, I have had multiple vaccines in the past 25 years (flu, covid, tetanus, etc.).

I have not been tested for Lyme. I was tested for Sedimentation Rate.

 

[Feynman]

lgelb -- thank you again for your response. I have a question regarding testing for inflammatory markers. Can you provide a few examples of these tests so that I can review my test results? The only thing I saw in the results was Sedimentation Rate (normal).

Waiting for my MRI/EMG is tough, but I'm trying to get on with things. I have been asking myself what else this could possibly be? Perhaps some type of motor neuropathy, although my brisk knee reflexes and increased leg muscle tone/cramps seem to argue against that. I've also wondered about MS (my dad had it), but the fasciculations and lack of significant sensory involvement seem to make that less likely. And I guess some type of cervical spine compression could be the cause, although that seems unlikely based upon what I have read.

 

[Feynman]

Hello. As mentioned in my original post, one of my current symptoms is an almost constant need to clear mucus/phlegm from my throat. It feels as if there is a location on the right side of my throat where the phlegm "pools", and swallowing does not seem to make any difference. The only way to get it out is to cough it up. Fortunately I am not experiencing any swallowing problems.

I will be seeing my GP tomorrow, and I was going to ask him for a referral to further investigate these throat clearing issues. I would appreciate any comments or advice regarding what type of referral I should seek -- ENT? Speech therapist? Something else? My GP is very supportive and takes my concerns seriously.....I'm sure he will be open to any specific requests I may have for further investigation of my throat clearing issues.

Thank you in advance for your assistance. All of you on this forum are incredibly helpful.

 

[lgelb]

ESR, CRP, and PCT are common inflammatory markers. PCT would be less commonly done.

An ENT is best equipped to look for structural issues, infection, and lesions in your throat.

 

[Feynman]

Thank you! I had the ESR test and it was normal. They have not ordered a CRP or PCT test yet. I don't expect any further lab work until after my MRI's and EMG next month. At that point I expect to either be referred to a specialist, or told that they can find no abnormalities.

I have also been referred to an ENT for a nasal laryngoscopy......not sure how long the wait will be for that procedure.

 

[Feynman]

Thank you, Laurie. I have a question about Pulmonary Function Tests. As I have stated above, I have not yet received a diagnosis (ALS or otherwise), and I'm scheduled for MRI and EMG tests next month. However, I now think that over the past few months I may have also been experiencing some respiratory symptoms. For the past few months my sleep quality has been terrible -- waking up every few hours, feeling groggy all morning, naps during the day, etc. I had just attributed this to stress and anxiety, and was assuming it would go away at some point. But when I was at my Primary Care doctor on Friday, I noticed that my SpO2 level was only 96%. This caught my eye because in the past it has always been 98%+. So for the past few days I have been checking SpO2 regularly with a pulse oximeter, and the resting value is consistently 95% to 96%, which for me is definitely below normal. I have no idea what my O2 or CO2 levels are when I am sleeping, but I am wondering if this could be why I keep waking during the night.

I feel that a PFT would perhaps be in order, but I'm not sure how to proceed since I'm in the "stand by" mode waiting for MRI/EMG. I was thinking about going back to my PCP to discuss this, and to specifically request a Pulmonary Test. If I do have a respiratory problem, regardless of the cause, I do not want to delay BiPap or whatever other treatment may be necessary. If I wait until the MRI/EMG are complete, I will most likely not receive a Pulmonary test until February. Everything I have read on here suggests that BiPap use should not be unnecessarily delayed, so it seems that time may be of the essence.

Please let me know if you have any comments or advice regarding how I should proceed. My knowledge of the workings of our health care system is limited, and it often seems that things happen slowly. If a PFT is advisable, I really don't want to wait until February. Thank you!

 

[lgelb]

Small variations in O2 as you describe are very normal. There is really no point in self-testing in your case.

Why not buy or borrow a FitBit or smart watch and see what your sleep stages, movement, breathing, and pulse rates are like? If there are abnormalities over a block of time, that will be evidence for asking about a sleep study.

You may have sleep apnea or another sleep disorder, but again, respiratory onset ALS is not subtle and you have been seen by both a PCP and neurologist. ALS and OSA are not at all the same thing.

 

[Feynman]

Thank you, Laurie. I will follow your advice and obtain some type of sleep monitoring device. My wife says that I have not been snoring lately, so I had not really considered OSA. But who knows?

If I see anything unusual on the data, I can take it to my PCP for review.

 

[Feynman]

As suggested, I have attached some basic data from a simple home sleep O2 and pulse rate monitor. Looks like overall average sleeping SpO2 of 95%, and min of 89%. The lower oxygen numbers were early in the night when I was sleeping on my back (average SpO2 93% sleeping on back). I seem to sleep (and breathe) better when sleeping on my right side. ODI 4% was 5.2/hour, and ODI 3% was 15.3/hour.....not sure if this is significant. Could early ALS respiratory involvement cause sleeping O2 and Pulse Rate numbers such as these?

I would appreciate any comments or insight to help me determine if I need to schedule a consult with my PCP. Unfortunately I am still waiting on MRI, EMG, and laryngoscopy, and my other symptoms (fasciculations, stiffness, cramps, throat, etc.) continue, so nowhere near a diagnosis yet. Thanks to everyone for your insight and support.

 

[Feynman]

I finally had my MRI's. Brain and Thoracic spine were completely normal. Some minor cervical spondylosis, but without significant cervical canal narrowing. My neurologist comments were as follows:

========================================================
There is no cord lesion of the C or T spine. There is mild foraminal narrowing at C5-6 and at C6-7 moderate loss of disc space height without significant canal narrowing. Uncovertebral hypertrophy results in moderate left-greater-than-right neural foraminal stenosis.

There is certainly nothing here to cause any problem in the legs. Some of the neck findings may contribute to neck pain, but are not likely to cause any significant neurologic problem.
=========================================================

So, if I understand this correctly, it appears highly unlikely that my various current symptoms are related to brain or spinal cord lesions, or to a structural problem with the spine. I am still waiting on EMG and laryngoscopy. While I continue to experience stiffness, weakness, and fasciculations throughout my limbs and torso, as of now my most bothersome symptoms are continual throat clearing and mild shortness of breath.

I will finally have my EMG exam in about two weeks.....and I am nervous. Given the normal MRI's and blood tests, the list of differential diagnosis is shrinking. I realize that I need to know what is causing my symptoms, but part of me is foolishly wishing that this would all just go away. At least after the EMG I should know where I stand.

Many thanks to all who contribute to this forum.

 

[lgelb]

ALS wouldn't relate to these kinds of variations in sats. You may have sleep apnea. It is often worse on your back. I would ask your PCP about a real at-home or sleep lab study. It is hard to tell how abnormal this is without the ability to roll over the data, and it would really help to have the sleep cycles superimposed on the pulse as you can do with a Fitbit. But of course a sleep study is even better.

I also noticed your pulse took hours to drop to a typical sleeping rate for a healthy person, which makes me think about anxiety, stress, pain, etc. So that could be another indication for a study.

 

[Feynman]

Thank you. I will ask my PCP about a sleep study at my next appointment (in about 2 weeks). That will be a few days after my EMG, so it will be a good time to discuss next steps. Depending upon the results of the NCV/EMG, I would expect to be referred to the local ALS clinic if appropriate.

 

[Feynman]

I thought I would post a quick update about my recent nasal laryngoscopy for those that may be experiencing similar throat symptoms. In addition to my other symptoms (fasciculations, cramps, stiffness, weakness, etc.), for the past month or so I have experienced the need to constantly clear my throat of mucus/phlegm. I have also had an annoying chronic cough for several years (since Covid) that has not responded to inhalers or any other treatment. This cough has become worse over the past six months. I have of course become concerned that these symptoms may be related to ALS or some other neuromuscular condition.

This week I had a nasal laryngoscopy performed by an experienced ENT doctor. The bottom line is that he did not see any visible structural anomalies or defects, or obvious reason for my cough or throat clearing. However, he did see evidence of possible "silent reflux" (I am on acid reflux medication and do not currently perceive any heartburn discomfort). He recommended an esophageal endoscopy and referred me to a gastroenterologist for that.

The ENT felt that my chronic cough and throat clearing may be "neurogenic", which as I understand it means that the throat irritation and feeling of mucus/phlegm may be due to irritated sensory nerves. In other words, although it feels to me that I need to cough, or that there is a lot of phlegm that needs to be cleared, in reality these feelings may be due to nerve irritation. The ENT said that there were some possible medications that we could try to address this possible cause, but we agreed that we may want to wait a few weeks until my EMG and other neuromuscular evaluations are complete. The bottom line is that while he could not guarantee that my throat issues were not due to neuromuscular disease, he saw no specific evidence of that at this time. I have not experienced any swallowing difficulties, so that is a good sign.

I am scheduled for limb NCV/EMG next week with an experienced electrodiagnostic neurologist. I am nervous, but feel that I will know much more about my situation after the EMG. I am assuming that regardless of my test results, I may be referred next to the local neuromuscular specialty clinic. In addition to being an ALS clinic, they also diagnose/treat conditions such as MMN, CIDP, MG, MD, etc.

Thanks to all in advance for any comments or advice. Any specific questions I should ask the doctor who performs the EMG next week?